I have been on Rebif for 20 years (I was one of the original trial patients in the UK) starting on 22mcg and increasing to 44. My consultant has asked me to consider coming off the injections as I have progressed to Secondary Progressive and Rebif is not thought to work once the Relapsing Remitting stage has passed. I am really worried as I have remained fairly stable since being on the drug and I am told there is nothing suitable for me to switch to so it will be cold turkey and no replacement. I am assured that if I experience any sort of relapse then I can go straight back on to the injections. Has anyone has a similar dilemma?
I was on Rebif for 10 years and was taken off as I have also progressed to Secondary Progressive.
I was also fairly stable on Rebif so it was a bit of a shock to be taken off it. This happened approx 2 years ago and since then I have been okay. I think the biggest thing was getting used to life without medication emotionally.
I felt at the time as I was on being put on the scrap heap as it also coincided with transferring my care from an acute hospital to a Center of enablement.
However I do not miss the injections and I have been so fortunate with no relapses since Rebif. I had become used to the yearly visits to the Dr.But now I contact the MS Nurse if needed and feel much better about the whole situation.
I do hope you keep as well as you can.
Wow! I can remember going to the HOC and canvassing to let DMDs be available to all on the NHS because NICE was saying no! The MS Society orchestrated this; I think it was in 2000.
If so you must have been on the trial; if so brilliant but I was not aware there was a time limit in taking them? You should find out why; as they are in the dark as far as this drug is concerned; why it works; what affects it can cause and now what length of time you can take it.
Is taking you off just a precautionary measure? I’m not one of these big drug company haters but this does smack of making their money and not continuing trials to find the efficacy of the drug.
I’ve been on Rebif since 2000 and thought on moving to Spain, that I’d be one of the few long-term Rebif-ers. She told me that she had about 8 people who’d been on Rebif for between 15 and 20 years and still are on it.
I had a small relapse this year, so there’s no talk of stopping it and my neuro thinks I’m definitely still RRMS. On reflection, he’s correct as I haven’t progressed at all since diagnosis. I was having a lot of relapses though and the Rebif stopped them - not completely, but down to 1 every 3 years on average.
See how you go - at least you can restart if you need to. I’d insist on staying on it. If you aren’t progressing, then surely you can’t be SPMS?
Maybe your neuro is just thinking that on average, you ‘should’ be progressive.
I would have thought that the key thing is whether or not you are actually progressing. If you aren’t, then there is no way you could be SPMS because Rebif does not prevent progression. If you are, then there is a decent chance that you are SPMS in which case, stopping Rebif may have little effect.
I can understand the fear though. My neuro took me off Copaxone in 2010 and all hell broke loose in terms of relapses. I couldn’t get on a new DMD quick enough but my neuro was not exactly quick to sort it out (tbh, not his fault - we were waiting, hoping, for the oral DMDs to be approved). Having been through that, I would do just about anything to stay on a DMD even if it was obvious that I was SPMS! But if I couldn’t, I would make sure that I had it in writing that I could go straight back onto Rebif without having to wait to see the neuro - in other words, that a phone call to my MS nurse would get it sorted out immediately.
I hope it works out OK for you.
Thanks for all of your replies.
They feel I have progressed to SPMS as I have no new symptons just a gradual worsening of the existing ones.
It will be very much suck it and see and, to the best of my consultants knowledge, no one has been on it as long as I have. They are leaving the decision entirely up to me. It would be heaven to come off of the injections. I have large areas where I am unable to inject as I have so many hard lumps and bumps the needle wouldn’t even penetrate any more but, to be frank, I am terrified of what might happen. There is no actual time limit to taking the drug but it is thought that it will no longer work once the RRms stage has passed. As no one in the UK has been on it as long as me they are unsure if I am likely to get a relapse but they don’t think I will. They are not going to switch me on to any of the other treatments as none of them are effective at my stage.
I did the original trial 21 years ago. Turned out I was on placebo initially and during that time I had a major relapse. I was switched to the real thing after 2 years and have been relatively stable since then.
So I still don’t know what to do!!!
This is such a difficult decision to make. I have been on rebif 44 for 7 years.
I too would be very scared to come off the treatment but if you are spms then the rebif might not be helping you anyway.
I don’t know how far drug trials have got for spms but i would advise that you do your homework and find out if there is anything in the pipeline for spms. You might be able to stay on rebif until something is licenced for spms. (just a thought). I don’t know much about trials for spms but read that a trial was going to be done for Tysabri for spms. Could your decision be delayed a while?
Could you possibly look into getting on this trial? or another trial? (don’t know much about all this but i am just relaying what would be going through my mind if i was faced with this decision)
I don’t think there is any wrong or right decision in all this.
It’s just an incredibly hard decision. Sorry - i’ve not been much help have i?
I wish you well.
Thanks Teresa. My consultant tells me that I am unable to go any other trials due to the length of time I have been on Rebif.
I will definitely look at treatments that are in the offing for SPMS and how long it is likely to be before they are available.
If it aint broke dont fix it would be my view,but luckily I’m not the one to have to make the choice.
Good luck with whatever you decide but I would be wary of any assurance to put you straight back on if it went pearshaped because surely it would then have to go back to funding panel etc.
Hope it works out for you
Hi , gosh that is a long time, I have been on betaferon since March 1996 so 16 and a bit years. I just see the nurse these days but the last time I saw neuro, I think about 7 years ago after my daughter was born, he asked if I wanted to stay on betaferon and I said that I did. He said that he would be surprised if it was still working but I could stay on it anyway. I think he was hinting that he thought that I was probably sp but he didn’t actually say that. The nurse doesn’t say much, she just does the annual review. Like you, I am reluctant to come off it. I am much worse now than when I started it in terms of my walking and balance however they are really my only symptoms and I am still working so all things considered I suppose i havent done too badly and i am scared to come of it. So, when I see the nurse for my annual review I don’t ask too many questions, the less said the better and I just stay on it. Cheryl:-)
A friend was taken off of Betaferon this year and seems to be ok now. She was on it for over 10 years but is over 70. She was upset at being taken off of the drug and I think the stress made her ill for a while but a few months later she seems ok and has just celebrated her Golden wedding aniversary.
It is scary to think that relapses might come back but I think that happens to lots of people. Good luck with it all. If the neurologist will let you go back on it if you have more relapses that’s got to be a good thing.
After much family discussion I have decided to come off of the injections. I am going to wait until Mid Nov as we are going on holiday and I am going to wait until we come home.
Just the thought of no injections is heaven to me. I am running out of places anyway!!!
I will place progress in the New Year. Thanks to everyone who has commented. It has all helped enormously.
Good luck. I wish you well.
Let us know how you are.
Wishing you all the best and that you do well without the Rebif.
Is there anyone out there who has stopped rebif? How did it go? Can you stop abruptly??